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The Checkered Eye Project

People wearing this symbol have partial blindness aka low vision.

Blog

1

Color

Before I tell you  a personal story related to living with a visual impairment, I have some project news. Thanks to our Swiss associate Rosalind Zaugg, the Checkered Eye Project (CEP) is taking another step toward awareness in Switzerland.  In 13 years the CEP has been unable to enlist assistance from Canadian organizations that provide services to people who are blind or have low vision.  However, thanks to Rosalind's efforts over the last few months,

the UCBA, the biggest such organization in Switzerland, wrote and published an article about the CEP in one of their newsletters.  As a result of the article they received some interest in the checkered eye from clientele and so, at an upcoming  open house in August, they will be displaying  checkered eyes and CEP literature, both translated for them into French. 

Although this doesn't mean that the UCBA is officially on board, I remain optimistic.

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This month my hubby Ray and I have been working on a renovation to our basement.  We did some of the work but most of it we hired out.  Of course all the design decisions are ours.  Here’s how that’s relevant to the Checkered Eye Project blog; we’re both color blind. 

Ray is an average sighted person, wears glasses for reading and driving, but he is quite color blind.  I commented to him one day that I thought the brown shirt he was wearing was a good shade for him.  He looked a bit disappointed and told me he thought it was red – significant color blindness!

I was unaware that I was color blind until being thoroughly tested when the doctors were trying to diagnose my condition.  Even since being informed that I am color blind I haven’t found it to effect much.  I match my clothes just fine, paint the odd piece of art, and do well at fabric selections for sewing projects.  So I felt quite confident in the color selection I made for the bank of cabinets we bought for the wet bar in the basement.

Wrong!  Boy was I wrong! I was planning a color scheme that is inspired by a pair of vases I have

and the color I wanted for the cabinets was red, fire engine red. 

The color I got was not that!  I posted a photo of them and asked my Facebook friends what they’d call that color.  I got answers like burgundy, eggplant, and merlot. 

I’ve never used any of the color detecting gadgets that are available for people who can’t see for themselves, so I’m not sure if they differentiate between colors like red and burgundy.  Regardless, since I do okay, as far as I know, with day to day color picks, I don’t’ think I’ll go out and get one of those just yet. I will however seek consultation from someone who has acute color vision the next time I'm making choices about things that are expensive or large permanent fixtures in the house!

My take away from this experience is that it's important to understand my own limitations. That way I have the opportunity to learn about tools and methods with which to manage them, and decide which ones work for me.

 

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3

Just Newsy

I had another post almost ready for this month's entry but some really cool stuff happened just recently that I think will upstage that...

On Facebook I discovered a group about awareness for Stargardt's Disease (S.D.).  This is the condition that caused my visual deficit.  Cool.  I thought I'd join up and see what folks were talking about.

One of the posts was a list of bloggers who have S.D.  This caught my interest so I opened up one of them.  I started reading the blog and comments and was quite moved by reading a dialogue between the blogger and a lady in her 30s who'd been recently diagnosed with S.D., and was sounding quite upset.  The blogger gave her some reassuring information with a personal touch and the whole thing reminded me how wonderful peer support can be.  I've been living with this condition since I was a kid and can likely ease the worries of some people who are fretting about what's to come.  It will be great for me also to have people to chat with who can relate directly to some of my experiences and offer their perspectives.  I've got to work on my technical skills though because I wasn't able to figure out how to post the comment I composed! 

Another recent discovery was the movie "Going Blind".  It's a documentary about a man's experience of losing his sight and learning about what help is available for people like himself. I haven't seen the documentary but my impression is that it outlines some services, products and strategies people use to manage with visual impairment and the fact that hardly anyone is aware of many of them.  Of course I thought immediately about the checkered eye and how it would have been perfect to have some info about it included in this movie.  Well that ship has sailed, but I've had some contact with the people responsible for the movie, and I'm optimistic about doing some sort of cooperative thing.  They also have a Facebook page and the host posted a link to the checkered eye website.  It got 23 "shares"!  As a result, I've been getting some really widespread queries and orders.

And of course my own personal recent goings on: I got officially approved as a candidate for research into treatments for S.D.  All I had to do was give a blood sample which was then tested to determine if I have the genetic mutation associated with S.D., then wait a year and a half for an appointment with a doctor who could verify by examining me, that I in fact have S.D.  The final step felt a bit like an awful fuss to gather the same information we've had for many years, but now they have current photos of my retinas and I got to take a wee trip to Toronto with my hubby.

So on my trip I was delighted with accessible literature in a couple instances.  First, at the Delta Chelsea Hotel, where I requested accessible literature when I made my reservation, I was very happy to find a large print version of their room service menu and emergency procedures, and a phone with an oversized keypad.  I've been asking for these accommodations for years and this is the second time they've ever been succesfully provided.

Naturally when my hubby and I went for a bite and a beer at Jack Astor's, I asked if they have a large print version of their menu.  Expecting the usual response, I was surprised, as was our waitress, to learn that they did in fact have an accessible version which had both large print and Braille.  Super! 

My reading software must be from the US because when I was using the initials as an abbreviation for Stargardt's Disease without periods,  it was saying "South Dakota"!  I figured I should add the periods for any readers who use screen reading software. 

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A post by Sam Thaw

 The above photo depicts 18 yesar old Sam Thaw helping his mother Libby by reading receipts while she completes documnents for the Checkered Eye Project tax return.  This blog post was written by Sam.

 To have a parent with low vision comes with advantages and disadvantages. The latter consist of things that could be looked upon as chores, but, have made me sensitive to and aware of other people’s needs, whether they are mental or physical. Advantages include being able to sneak a little "something something" by her in the night or free 411 for our family. The so called chores consist of helping my ma cross the road or walking with her somewhere, reading articles or labels to her.

Being able to sneak something by her use to come in handy when I was younger, trying to get three cookies instead of two and sneaking paraphernalia past her. But as I grew older I realized that I felt guilty using her visual acuity to my mischievous gain. That realization was a good lesson for me. It taught me that just because you can cheat, and not get caught, doesn’t mean you should. I took that lesson and transferred it to cards, video games, and day to day life.

The chores I do to help my mother are quite easy, though as a selfish youth I sometimes secretly loathed the moment my mother wanted me to walk or read with and for her. As I grew older, I became aware that this was something I could do to make my mother’s life easier and more comfortable. I’m now happy to help her out doing whatever she needs. These chores have also made me more aware of what other people need. For example help an elderly person by grabbing something heavy or out of their reach for them.  All in all I feel like having a parent with low vision is a good experience, thanks for everything ma.

 

 

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